Many hospital patients are unaware of their rights, the quality of care they are entitled to and health legislation, the director of the Irish Patients' Association tells Mic Moroney.
If you met Stephen McMahon at a medical conference, you might take him for some senior specialist or pharmaceutical executive: the deep blue suit; the silvery hair; the sharp eyes behind the thin-rimmed spectacles.
Until, that is, you see him up on the podium as director of the Irish Patients' Association (IPA), using management jargon to hammer home a patient's raw experience, with slides illustrating how a hospital may as well be a foreign country, with its strange customs, language, ritual gowns and masks; or helpful bubblegrams showing its many real hazards: medication, clinical treatment, hospital management and indeed whether a patient ever gets access to healthcare - all highly thorny issues presented in the most polite, most logically digestible way possible.
At his office in Ballybrack, south Dublin, he apologises for being "dressed down" in a track suit, two weeks after a procedure on a frozen shoulder. A fit-looking man in his early 50s, McMahon is an accommodating character, but underlying the unflagging courtesy and easy manner is an unerring insistence on the principles of a patient's rights and dignity. It's a role he took on after a series of family health crises left him battling with clinical insensitivity back in the late 1980s - and not least his elder brother's lifelong experience of cerebral palsy.
Our interview is interrupted twice by phone calls from patients who are having difficulties. Again apologising, McMahon spends time listening, providing moral support and information, and jotting down notes to remind himself to make direct interventions with hospitals, public health professionals and the social welfare system.
The day before, he confesses, he had written "a snot note" to the chief executive of a hospital - "and that's really not like me, but the issues in this case were so basic and so serious. Otherwise, our strategy is to promote partnership with health-care providers - we don't want to be a catalyst for grievances."
In this way, the IPA takes a different approach to that of the other key Irish patient advocacy group, Patient Focus, which concentrates on more intimately supporting patients who have been injured by medical intervention, often through litigation. The most high-profile case was that of Alison Gough against consultant obstetrician Michael Neary and Our Lady of Lourdes Hospital in Drogheda, Co Louth, and there are roughly 100 cases backed up behind it. The IPA and Patient Focus worked closely together before diverging five years ago to pursue their separate strategies.
Meanwhile, McMahon has become a player within the health system itself, mainly by exercising his core discipline - systems analysis - and the experience of 30 years in Esso management, which he left 18 months ago. He has evidently earned the trust of Irish health managers, who have facilitated his numerous research projects such as his recent high-profile report on the unprecedented and unsustainable drop in scheduled admissions to the Mater.
McMahon crunches numbers into vivid pictures, many of which centre on issues of quality of treatment. But a recent national survey by the Irish Society for Quality and Safety in Healthcare (ISQSH) reported a 92.9 per cent patient satisfaction rate with hospital care.
"Granted," he said, "we don't tend to hear from that 93 per cent. But I would argue that most patients aren't equipped to evaluate their treatment, and there are so many other aspects which came out of that survey: problems of communication with medical staff; consent issues with regard to medication and side effects; the fact that 70 per cent of patients weren't aware of any complaints procedure . . .
"Also, that high satisfaction rating probably had something to do with a 'malaise consensus' - you know the Irish way, that we all know things are bad, but we just have to put up with them."
McMahon regards "informed consent" - as outlined in the patients' charter (see panel) - as "the cornerstone" of any doctor-patient relationship. "It's not just about signing a consent form as you're going into the operating theatre, but about a whole evolving two-way communication with your doctor."
Many consultants would dismiss informed consent as "getting in the way" of treatment. McMahon identifies two key problem areas as "inappropriate consent processes, or doctors refusing to enable a patient to have a second opinion. At the moment, neither would be regarded as doing the patient harm, unless there was maybe a fatality as a result." However, McMahon, and his IPA co-director, Brenda Wheeler, sit on a range of high-level committees. McMahon sat on the Health Department's initial advisory group on the implementation of Enterprise Liability, the Government's highly contested solution to escalating medical insurance premiums against malpractice claims.
McMahon welcomes the fact that the Enterprise Liability scheme proposes to streamline the process of taking malpractice claims and its proposed implementation of risk management and risk managers in all acute hospitals. He is also encouraged by the move to record adverse incidents affecting patients into a centralised database, so that patterns can be discerned and thus, hopefully avoided.
Brendan Phelan, in the Department of Health and Children, says the database, controlled by the State Claims Agency, has already logged around 4,000 "clinical incidents". The reporting mechanism should be implemented in 130 health institutions by the end of the year.
McMahon also sat on the Adelaide and Meath Hospital Incorporating the National Children's Hospital's innovative policy group which laid down guidelines on informed consent, complaint mechanisms and risk management, including a pilot initiative begun in 2000, led by Tallaght's Head of Pharmacy, Tim Delaney.
Now a fully fledged policy within Tallaght Hospital, it means that medical staff who report medication errors, "near misses" or adverse reactions to medications will not suffer punitive measures. Before this, between 10 and 20 incidents were reported per year. Now, there are 40 to 50 per month, and serious incidents are subjected to "root cause analysis".
Within that policy group, McMahon pushed the envelope further so that now, when such incidents occur, they should be fully disclosed to the patient.
As McMahon says, "risk management is also going to overflow into clinical practice". He cites the assertions made by Denis Cusack, Professor of Forensic and Legal Medicine at UCD (and Dublin City Coroner) that - extrapolating from US surveys - anywhere between 950 and 4,000 patients may die in Irish hospitals every year due to medical error and accidents.
Looking ahead, the Irish Medical Council is now considering how a "Competence Assurance" scheme for doctors might be implemented, and McMahon sits on its working group. The scheme envisages a system of awarding points to doctors for demonstrating that they are re-educating themselves in new developments in their specialised field.
In the near future, this will also involve a "clinical audit" of every aspect of a doctor's practice, eventually followed up by a review by that doctor's peers. The Medical Council's director of competence assurance, Prof Paul Finucane, says that the initial process will be highly confidential and "self-auditing". However, McMahon believes "laypeople" should be involved in the audit process. Despite their differences in views, Finucane remarks that McMahon brought "an air of reality" to meetings.
Like the Council itself, McMahon has identified the necessity of amending the Medical Practitioner's Act (1978) to allow "the Medical Council to become more user-friendly to the public". Right now, McMahon is keeping his fingers crossed for Department funding for a network of IPA-trained patient advocates who will have "basic counselling skills, be familiar with hospital policies and understand various complaints procedures, as well as the rights of patients under the Freedom of Information Act and even Social Welfare". He identifies mental health as an area of major concern.
"I'm fairly sure that many hospital CEOs across the country will facilitate our advocates, whose primary concern would be to act on behalf of the patient. These advocates will be fully independent, as opposed to on a hospital's payroll, because under such circumstances, their independence can be undermined by consultants in particular, who still have this independence that keeps them out of the loop." But isn't the powerful "clinical autonomy" of doctors a reality? "Yes, but the way I would approach that at a meeting is that I would argue for the seamless approach and I would mention the reality merely as a legacy item.
"It's all about negotiation, about changing the culture towards patient-centredness, but in a far wider way than just chanting a buzzword."
What of his own recent experience in the pallid attire of the patient? "Oh, there's no doubt about it: you're immediately reclassified. You're stripped off, given a pair of paper knickers and a gown, and a suppository to go out and stick up your bum." But did they know who you were? He chuckles. "I'd say someone got tipped off, because when I checked in for the day surgery, there was a very glossy, laminated version of the patients' charter on the wall, so maybe that was the one they move around for certain visitors. But seriously, I couldn't fault the attention I got, and it wasn't above what anybody else was getting, because I was watching out for that. I must have seen the consultant three times in the seven hours I was there."
Contact the IPA on 01-2722555. For the legal dimensions on informed consent see Mary Donnelly's book, Consent, Bridging the Gap between Doctor and Patient (Cork University Press)
The charter was drawn up in 1992 within the Department of Health. Apart from being incorporated into the Government's Health Strategy, the charter has not been overtaken by any other declaration of patient rights. Although it has no statutory basis in law, a European Patients' Charter is now being drafted for inclusion in the forthcoming European Constitution.
Although the charter should be prominently displayed in Irish hospitals, you will be hard-pressed to find one and, in practice, the rights it outlines are routinely ignored. Also, the vast majority of people have never heard of it.